Hysterectomy worries. Any advice would be helpful.

[Lullabell]

I am due to have a full hysterectomy in a few weeks. I am 37 and have had children, no plans for anymore. I have endo, have had cysts removed from ovaries during lap op (March this year). The lap op showed that my womb is stuck to my bowel (had colonoscopy, no endo in bowel) and that it would have to be open surgery to sort this out. I had M.Coil fitted at time of lap op. My pain is better. Bleeding/periods seem to come and go when they like and last a min of 5 days. I actually had two weeks without a bleed then had a period and bled/spotted/thick choc. discharge for 11 days. So I guess the coil isnt really working for me. Before the coil, I was in alot of pain leading up to, during and after my period. My concern is my age and having to be on HRT for 12-13 years. My mum has had breast cancer (glad to say she is well now). I am also worried about the many side effects HRT can have, I dont want to be worse off for having it. I am seeing a doc on Tues who is based at my gp surgery and is a gynaecologist and in two weeks due to see the gynaecologist who is due to carry out the op. I hope both can answer my concerns. I am thinking of asking if both ovaries can be left so I wont need HRT. I am not sure why they are looking at removing them but I am sure they would not be planning to without valid reasons as I was told at the beginning that a hysterectomy was a last resort. I want them to free my womb from my bowel and happy for them to remove it so I wont have to suffer with periods anymore as I dont think I can manage without the coil due to the pain but I am getting fed up with the bleeding whilst being on the coil. Any help, suggestions and your experience would be really helpful. I have read up on hysterectomy and seem to read horror stories more than good outcomes - really dont know what to do. I am even considering telling the docs to leave it for now and see what happens but just feel so rubbish with the bleeding and back ache nearly all the time - I dont really want to do nothing. I also feel I would be letting my GP down as he has been very supportive and has listened to me over and over and I told him I would be happy to have a full hysterectomy, but now not sure if I want to loose everything as worried about HRT. Something has to be done - but just worried, sorry, think I am now talking rubbish and repeating myself....!

[MoonlightB]

I have been told that a hysterectomy can have no effect on endo so if you don't feel comfortable with it don't do it. That would be my advice. My womb and ovaries are fine on the scans, at the moment, but I have still have incredibly painful endometriosis. It's the hormones that are the problem and like you, mine are too hardcore for the coil to deal with on it's own. Why not try the hormone therapy without the op.

[Margo45]

Hi Hun, I'm. At the exact same point as you and have postponed op 3 times! I'm terrified but now stuck with sciatica all the time which is caused from the endo and adnomosis. They need to take overies as it is them that cause the endo and it will just keep growing if you keep them. Also my doc said that he has had women come in that insisted on keeping their overies just to end up dead with ovarian cancer. I completely understand everything you are going through but I know lots of women that have had op and said best thing ever, only one of them had endo but she had overies removed as well and she's fine. If you are like me you keep going round in circles but just remember that ladies who have successful ops probably don't put their stories on here, they just get on with life, you only ever hear horror stories. Whatever you decide, I wish you lots of luck and hope all goes well for you. Xxx ps where are you having op done?

[Lullabell in reply to Margo45]

Hi, I live in Devon and due to have this done in Royal Devon and Exeter Hospital. I know you only ever read the horror stories! I am so concerned about being on HRT for such a long time and the side effects but dont want to not take anything as dont want to have the menopause symptoms just yet! Also want to protect my bones. I shall see what I can get out of the two docs before the op date and hopefully feel better and know what I am going to do. I know I do want my womb removed from my bowl and happy for my womb to go. I need to decide if I keep overies so I keep my natural hormornes and face the possibility of another op in the future or have them removed and go on HRT ?? Its such a difficult thing to decide and no one can really tell me one way or the other. Thank for your reply. x

[Sheri26]

I'm in a similar position, I'm 35yrs two children, do not want anymore, had lap in feb, cyst removed and endo treated, still have endo in Fallopian tubes, and adhesions. Seeing consultant on 16th oct, but know options are another lap or hysterectomy as this has already been disgusted. I'm happy to have it done but worried about hrt, my mum and nan started mena in early 40s . Fed up with this taking over my life, six months out of this year I've been rough, I didn't recover very well after the lap, and I also have a stomach ulcer, can't take most painkillers. I d be interested to see what you decide to do xxx

[Lullabell in reply to Sheri26]

Thank you for your reply. If I was a few years older I dont think I would be quite so worried. I know if I have my overies taken that I will need to go on HRT - I dont want to risk my bones later in life. But worried about the side effects you read about. If I leave them in, will I need another op later and have them removed anyway? I dont know and the docs cant tell me this either. I hope after talking to them I may have a better idea what to do. I will let you know x

[minnie71]

Hi, Im in the same boat too. Had my left ovary and grapefruit size size removed, along with surgery to treat my severe stage 4 Endo last Sept. My probs have continued (tho not as severe, but still very problematic), since. I had the Mirena coil fitted during surgery and a womb ablation, but my periods continued, along with associated probs. Currently I still have the coil and have also been on cerezette for 6 months, but to no avail. Saw Gynae last week who has offered me a hysterectomy too, but I have to tell him if I wish to go ahead at my next appt in Dec (which I will). In the meantime, I have been offered the injection which stops ur hormones and puts u into temporary menopause. It lasts for 3 months (tho I have to combine this with the cerezette and the coil). Is this an option for u?? If it works then it would mean that u wouldn't need the hysterectomy My gynae told me that a hysterectomy doesn't always cure ur endo and that u will likely stay the same condition u r in at the point of surgery. Once the ovaries r removed ur body cannot produce anymore endo. I'm 42 and will b getting my remaining ovary removed as I cannot c the point in going thru this surgery and not finishing the job preoperly. I cant stand the thought of needing yet another surgery at some point afterward, and also giving my body the chance to produce more endo is not an option for me. BTW - I have a clotting disease so HRT is not an option for me, tho I would love to have had this. HRT stops alot of the menopausal symptoms which r awful (I already get the severe night sweats etc) which r hellish, plus it keeps ur bones from getting osteoporosis. My gynae says that for me they will scan my bones regularly to check the density and when the time comes they wil give me something to stop the decline in bone quality. A much easier option would b to have had the HRT. My friend had the full hysterectomy over a year ago and i have watched her struggle too without HRT as this wasn't an option for her too.. it isn't the easiest thing to go thru and she still is now. Ask ur gynae about the injection... at least it will give u a little taster of what life could b like.. without having to go thru the surgery. Good luck with ur choice xxx

[Lullabell in reply to minnie71]

Reading these replys has been a help but its sad to say I am not alone with this choice. I have read so many times that a Hyst. is not necessarly the right action to take for endo which is a worry and makes this harder. Like you I dont want to keep having ops so wonder if I keep my ovaries if I will just end up having to have another op later on. On the other hands, not sure I want the HRT yet so is it worth keeping them if only for a couple of years ??? I dont know ! I just hope once I see the doc on Tues he may be able to help, I then go to the hospital for Pre-op and to see the consultant next week so time is running out, I need to make my mind up and hopefully once I have spoken to them I may have my answer. Thank you for coming back to me, please let me know how you get on.

[michelle2013]

Hi lullabell. I am in same situation as you. Well similar. I have been told I have active endo as have choc cysts. But I don't know where else I have it as never had laparoscopy. I also have adenymosis and a fibroid. Gynae discussed before I got results of scan having another ablation or hysterectomy but she thought my problems were due to adhesions in womb caused by previous ablation. When she gave me results said I could have mirena coil which I said no to or she would give me a hysterectomy if that's what I wanted !!! I said yes to hysterectomy but she said she would remove choc cysts and keep my ovaries or remove ovaries decision up to me. I am annoyed as don't think I was given enough medical information and sent home to make my own decision. Said if I had ovaries removed I would have to take hrt. Everyday I change my mind as to whether I want to keep them or lose them. I have had one zolidex injection out of a course of three and not sure if I want more. How did you get on with your appointments? I've made appointment to go back to gp to discuss these things and considering asking for 2nd opinion